Are you for real?

I recently saw an article ON FaceBook ABOUT FaceBook and how FaceBook  may distort our image of others and even ourselves.
“See?! Everything is lovely! My kids are beautiful!  My Instagram pics of my food are awesome! I do AMAZING , FABulous things!”

C’mon.  We ALL do it.
I mean, I am a pretty positive upbeat person, so I try not to be negative on FB.  Or this blog.  But I would like to think that I am fairly realistic.

But I thought about it.
And to be honest–
I, too, am guilty of gilding the lily.
I am guilty of the not telling the truth by omission.
I let all of you see here  (and on the Captain Jacktastic Facebook page) just how wonderful it is to live with Jack and learn from him
And while all of that IS true…

It also ain’t easy.

I don’t tell you about the tantrums.
I don’t speak of the head banging when he is not happy about not getting his way.
I dare not whisper about the hardship when he doesn’t want to eat  (he stamps his feet so quickly I refer to it as Flamenco Dancing!)
I leave out having to do things in a specific order so as not to antagonize.  I omit the time it takes to care for Jack.
I don’t want to bitch and moan about how EVERYTHING we do is about teaching.
I don’t want to discuss that Clay and I get very little grownup time together. (three hours! EVERY Thursday night! Good Lord willin’ and the respite worker don’t cancel!)
Then there is keeping up on all meds, tracking seizures when they happen,scheduling and keeping appointments at a clinic and hospital five hours away, researching new things about TSC, making sure Darrah feels loved and not pushed aside, work, regular family stuff like bills and shopping, oh and house cleaning takes on an extra added dimension when you live with Jack as toys get thrown EVERYWHERE, and extra clothes washing when there is a pee thru and making sure that there are enough chips in the house, and …………..

 

the list could go on.

and on.

But what good would that do?
Even is you are not a special needs parent., you know its rough- at least  intellectually.
I am not looking for pity or sympathy.
I am here to demystify.  I am here to educate. I am here to advocate.
AND
most importantly

I am here to see the silver lining–
to see the world through Jack’s eyes.
to be unafraid– like Jack
to be brave– like Jack
to put a different spin on this “lifestyle”.

I share the joy, the positive, the light, the beautiful moments, and the GOOD
because
in the end?
THAT is what truly matters…..
not what I don’t get
or don’t have
or what I may be missing.

Because from where I am standing?
THAT’S what makes my life worth living

and I’ll share that anywhere.

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Effortless Doing

Maybe I haven’t made this clear to you:
I love Jack.
I love Jack differently than I have ever loved anyone or anything before.
I can see you shaking your head…..”well, DUH!” you are saying to yourself, “of course!”

But

it’s not that simple.

This is not to say that I love Jack BETTER than I love anyone else.
I have a daughter that I gave birth to and she gave me purpose in life.  She healed my wounded heart just by her presence and who she is becoming.  She is her own creature.  She is beautiful.  She is compassionate.  She is kind,  She is fierce.  OH! Sure, she can be a pill and then some.  After all, she IS 12 and adolescence is not easy on ANYone involved.

But Jack……we have a different relationship.  Yes.  I take on the Mama role.  Yes, I AM a caretaker, nursemaid, autism whisperer, respite worker,  behaviorist and one on one aid all rolled into one.

But here is something else I am:
STUDENT.

Make no doubt about it.
Jack is my little zen master.
I have a tendency to barrel through life.  I am ever fueled by caffeine buzzing at a high frequency, trying to get 12 hours of work, cleaning, crafting, family time, etc into 8 hours time.  Sleep?  THAT’S for ametuers.  There is STUFF to be done! Let’s go! Multi-task! Chop Chop!! Mach Schnell! GO GO GO!!

And while people are amazed at what I get done…. I lose a lot.  The daily nuances of life.  The tightening of jelly jar lid.   The shutting of cabinets.  The details.

Jack has helped me to amend my ways.
To get me to slow down and be on Jack time.
Jack doesn’t stress about time.
Time is not a Jack construct.  You want to spend four hours standing at the fence taking apart a giant fuzzball to watch the tiny pieces of fuzz blow away in the wind in a random pattern?  Go for it.
All you have to do is breathe.

So.  I stop and I sit with Jack.  I LOOK at what he is looking at.  I try to see it as he does.
And you know, often times I am surprised by what I see……. A shadow.  A line.  A cloud formation.  The sky.
Have any of you really REALLY looked at the sky lately?  AND took it in with awe and innocence?
I highly recommend it.
You could argue that Jack has the luxury of this because of his “situation”– the brain damage,  the autism, the TSC.
And you would be correct.
But you would also be wrong.
Because Jack does too have a choice.
And Jack embraces that beauty.
Jack finds that joy.
Jack has mastered the art of  effortless being.

In the Tao of Pooh, while I run around being a bit of Rabbit (too busy, too thinking) and Clay represents Owl (knowledge is all)
Jack is our Pooh.
He is.
Rather, he IS.

And that is where my love for Jack differs from anyone else I have ever loved.
Jacks love is who he is.
It is his smile given.

It just is.  
He has no hidden agenda, no pretenses.
He is who he is.  And who he is pretty darn easy to love.

(deep breath in aaaaaaaaaaaaaaaaaaaand out)  ❤